As an ALS caregiver, I focus on hobbies close to home

Keeping the security of proximity while upgrading my time with nearby nature

Kristin Neva avatar

by Kristin Neva |

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After my husband, Todd, was diagnosed with ALS, we moved from Wisconsin to my childhood hometown in the Upper Peninsula of Michigan, where we built an accessible home on a small corner of my parents’ 38-acre plot. As his ALS has progressed, I’ve had to stick closer and closer to home because I never know when Todd will need my help.

I often take a walk down our country road or in the field that surrounds our house, routes that let me get home quickly. Sometimes I feel down much of the day as I complete my tasks and chores; on those days, it’s not until I go on my walk that I feel a sense of lightness.

I miss the sense of adventure and exploration Todd and I had when we headed out for a trip to a new city. We saw Bar Harbor, Maine, from the top of nearby Cadillac Mountain. We sailed Frenchman Bay on the Margaret Todd, a four-masted schooner, in the same state. We traveled to Taipei, Taiwan, and Paris, and we ventured out of each of those cities to explore the countryside. We made day trips to Chicago, and we hiked trails on the North Shore of Lake Superior.

But Todd has been using a power wheelchair since 2014, and he’s needed noninvasive ventilation for the past couple of years. His neck is so weak now that he can’t go anywhere comfortably, and he depends on me for his care, including clearing his lungs when they fill with mucus. Since I can’t go far from home, I’ve been expanding my world within minutes of Todd.

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Path-clearing as a hobby

I’ve been clearing a walking path into 10 acres of woods on the other side of the field. It’s work, but it’s also a hobby that keeps me close to home.

When my parents purchased the property 48 years ago, and for much of my childhood, the field was mostly clear to the far corner. A lone Scotch pine stood in its middle, and near the property line were patches of wild blueberries under a few trees, including a mature oak that I played under as a child. There were rock piles from the turn of the 20th century, as well as a vehicle shell left by the two brothers who’d farmed the land to grow potatoes and strawberries.

That old Scotch pine is now surrounded by many of its descendants, and elder brush, poplar, and other trees have filled in the rest of the corner.

Last summer, I tested the limits of my tractor, pulling up brush and pushing over trees to get to the old oak. I reached trees too big for my machine to move, so I abandoned that trail. Then, while pushing over smaller brush in a different area, I damaged a valve stem on a tire, and to my shock, a brown, briny liquid squirted out.

I plugged the leak with my finger and called Todd to tell him what was happening. He suggested I drive the tractor forward until the valve stem was on top, and then we learned that I had ballast tires filled with nonfreezing beet juice to increase the tractor’s weight and stability. We had the tire fixed, and I got back to working on the trail. I’ve completed a short loop through the woods, and I’ve made a path to the old oak.

This year, as I’ve had time, I’ve been improving the trail by pulling up roots with a grappler. When I finish that phase, I’ll switch out the grappler for the bucket attachment to smooth out the soil.

A wide dirt path appears center in the frame, with much greenery and many trees on either side. The path ends at a field of green grass; what appears to be a house is in the distance under a blue sky.

A path through the woods close to home. (Photo by Kristin Neva)

I don’t have a lot of time to work on my path amid caregiving and housework, but when I do, I find it a satisfying hobby. Unlike my other chores, it stays done, and I enjoy the end result. Making trails in the woods is a way to expand my world and see new sights while staying close to home.

Have you found hobbies or creative pursuits you can do while caregiving for your loved one with ALS? Please share in the comments below.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.


Dolly Syrek avatar

Dolly Syrek

What a wonderful way to relieve your stress. Thank you for sharing. My husband was diagnosed with ALS 6 months ago after extensive testing for a year. He is 78 years old. He was walking with a cane then overnight lost the ability to use his legs and the strength in his arms. I will try concentrating on my hobby - quilting which can be done at home. Thank you for helping me re-focus.

Ann Knuppel avatar

Ann Knuppel

I always look forward to your posts about caregiving. I am the sole caregiver for my husband Ron who was diagnosed in September of 2021 and has very limited use of his hands and also has a tracheotomy but only requires mechanical ventilation at night. I enjoy gardening and since we can no longer travel to Colorado in the summer we had a swimming pool built because it’s so hot in Texas. I enjoy doing some water aerobics in it. I also enjoy my 3 dogs, decorating and reading. We also live in the country on 42 acres but it’s all hay field. Your walking path is lovely and great job on clearing it! I miss hiking in the woods. Ron was an avid hiker and biker who climbed 7 14ers in Colorado and regularly biked up Vail Pass. It’s so hard to watch them lose all the things they loved. And it’s hard on us. Perhaps we should start a private facebook group or chat group to encourage and help each other out?

Kristin Neva avatar

Kristin Neva

Water aerobics sounds great! There is a group on facebook. Search for ALS: Spouse Caregivers support group

Kristin Neva avatar

Kristin Neva

Give yourself time--it takes time to come to terms with the diagnosis. Glad to hear you have an at-home hobby. A creative outlet is helpful!

Lois Carlson avatar

Lois Carlson

Hi Neighbor! I live in NW Wisconsin and my PALS husband (who coincidentally is also named Todd) has been in hospice care in Ironwood, MI for the last year and 4 months. This week will mark 10 years since his diagnosis. I'm proud of your tractor wrangling skills and your article is excellent. Good to know we caregivers can find kindred spirits in our neck of the woods. Thanks for your article!

Kristin Neva avatar

Kristin Neva

Thanks Lois! Never imagined I would learn all the skills I've had to with life with ALS--the tractor is one of the fun ones. Good to hear from a "neighbor" and also someone who's also been a spouse caregiver for so many years. Thanks for commenting.

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